Half a year without my sweetheart

Six months ago today, Allen died. Sometimes it's as fresh as if it were yesterday. At other times, I can't remember having him near. But I do often hear him reminding me of the power of music. And this morning the ABC played a wonderful version of Beethoven's 9th Symphony. What better reminder that hope and beauty can transcend loss and sadness.

This was Allen's last book - that is, the last one he never stopped trying to read. It's a notebook he built up during his final 10 or so years, when music became his greatest consolation. In it, he had pasted translations of the lieder he listened to over and over again. Like this one (Maiden's song), from a Brahms song cycle:

On Judgment Day I will rise again,

and immediately look for my sweetheart

and if I cannot find him,

I will lie down again and sleep.

Heartache, you Eternity!

Only with another comes happiness!

And if my sweetheart comes not in,

then I don't wish to be in Paradise!

The heat's on

It's only 90° outside this morning! That's a relief from yesterday (mid 90s) and the day before (top of 102°). But none of these temperatures is conducive to the kind of heavy slogging that my overgrown vegie patch would require if I were going to make up for a whole season of neglect.

 
In the matter of degrees Fahrenheit vs Centigrade, as in yards/feet/inches and pounds/ounces vs metres/centimetres/ and kilograms/grams, I'm ashamed to admit that mentally I still visualise the old rather than the 'modern' units of measurement. Australia converted to metric for most purposes during 1974, though the total conversion in all industries actually spanned a period of nearly 20 years due to the complexities involved in converting tools, road signs, speedometers etc. I originally migrated to Australia in 1969, before metric conversion, but was back in the USA for all of 1973. So I arrived back in Australia at the apex of the conversion timeline, and had to make that adjustment at the same time as many others. Perhaps I just consigned that one to the back burner, where it's still simmering. 
 
For 'young' readers and those my age or older who have adapted more readily to all things metric, check the thermometer and you will see that 102°F translates to about 38.9°C (and I wish I'd thought to photograph it two days ago, when that was apparently the hottest day around here since recording began sometime in the 1800s). Having to use decimals to make a point about temperature just doesn't do it for me – though wait a minute, normal body temperature to me will forever be 98.6°F, and not 37°C, as my daughter knows it. And yet, I like to think of myself as a person who can adapt to changing circumstances, someone who has moved readily among different cultures and countries in both work and friendship. Am I self-deluding in this as in other areas, perhaps?
 
Let's just agree: it's been damned hot. We do have excellent roof insulation, and get good cross-breezes up here in our hinterland location. So it's usually much pleasanter in the house than outdoors. There are ceiling fans in every room – one of the first things we did after buying this place in 1996. And ten years later, we installed good air conditioners throughout the house, too – even in my outdoor studio. I doubt we'd have invested in these if my mother hadn't been coming to live here, because we were never really worried that much about the few days every summer when temperatures rose into the mid-90s. But I'm now very grateful for the impetus that Mum's coming provided. Maybe it's age, but I'm experiencing the ennui brought on by heat much more this year than ever before. Even so, I try only to resort to aircon when the temperature is roasting. And I must admit that my reasoning has as much to do with soaring electricity costs ($200/mo. when either heat or aircon is used liberally vs. $100/mo. in off-seasons) as with ecological consciousness. 

Of course there's wonderful relief to be had in the pool. And until that 100° day earlier this week, we had been swimming every morning for the past week. It's no small effort to get Allen into his swimming togs and (safely) down to the pool terrace, then in and out of the pool when the surrounding surface is blisteringly hot and he feels every temperature variation so intently. Still, it's well worth the effort.

 

On our first swim just last week, Allen was quite literally overcome by joy, shouting out as he floated off, "Isn't this wonderful!" I think it's the freedom of movement he experiences in the water that gives him such pleasure, especially now that his mobility on land is so tentative and there's always the anxiety of falling. His balance and motor control are both very dodgy now. And though he still manages 15 minutes every morning on his exercise bike, he can no longer walk very far without succombing to exhaustion. I guess that's the result of insufficient exercise, poor circulation, age (he is, after all, 83) and, more likely, a combination of all of these plus the rampant disintegration of various areas of the brain. Everything from using a knife and fork to washing his hair in the shower requires some degree of supervision and, often, assistance. (He just can't remember that shampoo shouldn't be applied while the head is under the stream of water, or that a soapy head then needs to be rinsed.)  It's no wonder that floating freely in the pool gives him such pleasure.
 

Allen can't really swim any more – that's just one of many physical skills that he's either lost completely or that have deteriorated badly. But after experimenting with various flotation devices, even a life-jacket, we finally found a simple belted hard-foam device that supports him sufficiently, whether he's just walking in the pool or swimming' on his front or back. So now he will amble up the length of the pool in a kind of bicycle movement when on his stomach. And on his back he can manage a crude backstroke.

 

I worry what would happen if that belt buckle ever popped, and I have to remain near enough and somewhat vigilant for that reason. However, it's not far to the edge of the pool at any one spot. I think I'd manage to drag him there if I had to, in spite of never getting past intermediate level as a swimmer myself. But even though one half of our pool is very deep – even the 'shallow' end is up to my armpits, as we always planned to swim in the pool, not laze around – I couldn't possibly deny Allen the great pleasure that swimming provides just because there's a danger he might drown! He's had to accept too many losses without adding another.

 

Deciding what risks are worth taking is often an issue for carers. For example, I have a friend whose brain-damaged but physically strong husband recently decided he'd like to join a rowing club. She had to go into battle to get him in. The club was keen to take him on but their insurance company was a 'proverbial pain', said my friend. It's no surprise that insurance providers are by nature risk-averse, and this company only relented after forms were completed by doctors testifying to the fact that my friend's husband was fit enough to row with the best of them. Even then, they required that he wear a life jacket at all times. The club itself bent over backwards to help, even buying the life jacket! But my friend's husband is embarrassed that he's the only member required to wear one, and he wears a vest over the jacket to minimise his embarrassment.

 

I completely understood my friend's belief that the very small 'risk' of her husband experiencing a rare epileptic episode while rowing – possibly resulting in an accident – was more than balanced by the pleasure and sense of achievement he gets from participating in this sport. Life isn't risk-free for anyone, so why should her disabled husband be consigned to live a life of sterility! We shared a laugh about the fact that we carers must seem a pretty hard-hearted lot, in allowing our partners to take such risks. But not wrapping them in cotton wool is all part of the struggle to help our them live as 'normal' a life as possible.

_____________________

 

A postnote re safety and risk: The rubberised shoes pictured alongside the lifebelt above have been a godsend! Both Allen and I bought a pair of these years ago for walking up and down the stairs that lead to our pool terrace. That was after we had taken a tumble together on those stairs when going down the steps in slide-on sandals, me carrying all our gear and attempting to help Allen not trip over a hose lying across our path. I realised even then that slide-ons were a no-no for Allen, as his mobility had already begun to deteriorate prior to the open-heart surgery that we didn't yet realise he needed. Later, after that surgery and during Allen's long immobility and confinement to an Intensive Care Unit, I brought these shoes into the hospital when physical therapists began to get Allen up onto his feet, and he needed all the help he could get to relearn how to walk. The therapists loved these shoes, as they gave good support and grip on polished floors. Slippers were considered much too dangerous, even in hospital.

A good hospital story, for a change

Two weeks ago I had to call an ambulance to take Allen to hospital. He was taken to our local hospital, suffering from pneumonia. That was the end of a difficult week in which three generations of my family came down with a nasty viral gastro bug that our grand-daughter picked up on her very first day at a childcare centre. Poor little Charlotte seemed to take the 24 hours of vomiting and diarrhoea quite in her stride. But her parents and grandparents weren't so lucky.

Allen and I had gone down to Brisbane to help make Charlotte's first week at childcare a bit easier by picking her up each day after lunch, instead of her having long days in her first week of care. But things didn't turn out as planned. She, both her parents and I successively succumbed to the dreaded lurgy. I hoped Allen would be spared (after all, he wasn't changing nappies). So I rushed him home on Day 4, when I was well enough to sit upright in the car for the hour's driving. But on Day 5 it was his turn. Still, the gastro seemed to pass without too much trauma. But he did have great difficulty dealing with vomiting. And we think perhaps he ingested something nasty into his lungs at this stage. Whatever the reason, by Day 6 he had a high fever and obvious difficulty breathing.

The less said about being in hospital with aphasia, the better - that's been my attitude in the past. But here at our local Noosa Hospital, I can happily say the hospital experience, though not exactly pleasant, was made much easier for us both by their very enlightened approach to caring for persons with any form of dementia. Allen's progressive aphasia is progressing to the extent that he is now often mildly confused at the best of times. But when he's very tired, his confusion increases. And when he's as ill as he was the first week in hospital, he really hasn't much idea at all what's going on.

As we have private insurance, he was first placed in a very spacious and pleasant private room. But by the second day there, doctors and nurses recognised that Allen couldn't manage when left alone. He could not remember how to ring for a nurse – or even, in the first days of treatment, where he was or why. So he was transferred to a 4-bed ward in the public section of the hospital. Here conditions were definitely less convivial for visitors (e.g. no spacious lounge for making cups of tea or watching the Australian Open on large-screen TV!) But that hardly mattered. The outstanding feature of this ward (and of several others like it) was that this 4-bed ward had a full-time nurse IN THE ROOM 24 hours a day. In fact, the attending nurse was not allowed to leave the room, even to walk down the hall for linen, without a substitute nurse standing in.

The level of personal care in this ward was almost the same as in an Intensive Care Unit, even though these patients' medical needs may not have required high-level clinical nursing. They did require a high level of care, however, since almost all the patients I saw come through this ward in our 10 days there were persons with some degree of dementia or delirium. Having a nurse in constant attendance meant these patients were able to be safely treated for their medical problem AND safely cared for. No one fell out of bed or wandered down the hall. Anyone needing to go to the bathroom had only to call or show some sign. Everyone got assistance with meals to whatever extent this was needed. Most importantly, in Allen's case, someone was always there to remind him what was happening, where he was, when his wife would be back and generally reassure him. If we had had this facility when Allen left Intensive Care two and a half years ago, I would not have had to spend weeks sleeping in a recliner next to his hospital bed. I don't know the extent to which all hospitals offer this service to patients with cognitive impairments but it's a question worth asking before admitting anyone with dementia for treatment, if you have a choice of hospitals.

Allen is now in a standard 2-bed room at a small rehab hospital that he knows and remembers. He's been both an in-patient and a day-patient there in recent years, and so I hope this will help him to settle in well for the week or two of rehab that he's about to receive. If he doesn't settle, then I'll bring him home and just take him in for regular physiotherapy. But the fact we've managed to come this far is due to good nursing geared to the needs of a very special group of patients.

PPA and hospitalisation

I've written about this before (see Aphasia sufferers: Avoid hospital, if possible!). But something – I don't know what – has prompted me to summarise it here again.

My husband, Allen, was diagnosed with PPA in 2006. Annual scans since then show that the left side of his brain is deteriorating at a modest rate. And his communication competence has deteriorated accordingly. Even so, the extensive regime that he follows of various self-designed therapies of intellectual activity appear to be paying off, according to the gerontologist who treats him. And last month's annual visit to the specialist, following this year's nuclear scans, resulted in a big 'thumbs up': "You've made my day", was the gerontologist's summary. It might well have been otherwise, however.

In 2009, Allen required open-heart surgery to repair badly malfunctioning heart valves. The heavy sedation required for that invasive surgery, perhaps made worse by many hours on a heart-lung machine, had a catastrophic effect on Allen’s compromised brain. He experienced serious post-surgical complications. Initially, Allen did not wake for several days after surgery. When he did finally regain consciousness, he experienced epileptic-type fits. So additional medication was used to control those reactions, and this resulted in more days of virtual inertia and serious breathing problems. A tracheotomy had to be performed so Allen could be intubated, and a Pacemaker was inserted a few days later. After five weeks, further surgery was required when his original wound became infected and the surgical reconnections of the breastbone unravelled.

In all, Allen was nine weeks in Intensive Care, a further two weeks in hospital, and two more weeks at a rehabilitation hospital (though access to the latter was initially denied him, in view of his inability to fully cooperate with therapists; only the intervention of our surgeon secured him a place in rehab). Throughout Allen’s hospitalisation, many of the health professionals who treated him did not appear to allow for the complications that resulted from PPA brain damage. Eventually, after the second surgery that screwed together the damaged breastbone, Allen’s treating physician did give instructions that Allen should be allowed to do things at his own pace. This meant weeks of continued inactivity under full-time supervision of an Intensive Care nurse, and no rushing Allen to ‘get up on his feet’. Even so, it was weeks before doctors and nurses agreed NOT to give Allen sleeping tablets at night, as these had a devastating effect on his consciousness for at least 24 hours afterwards. However, they would not agree to stop giving him anti-depressants and, later, anti-psychotic drugs, even though the latter produced hallucinations that continued throughout rehab, where he was gradually weaned off all mind-altering substances.

It seemed to me that Intensive Care protocols made no allowance for the effects of brain damage on other medical procedures – even though we were actually warned about this in our pre-surgical briefings! After the operation, Allen was forced to try and stand and then walk long before he was sufficiently alert to cooperate – which placed great strain on his wound and, in my opinion, may even have contributed to the detachment of surgical repairs to the breastbone. Physical therapists did not vary their routines or timetables to take account of Allen’s good and bad periods of wakefulness. If he couldn’t manage the required movements at the time allotted for his morning therapy, often because of the effects of sleep medication, he would miss out on therapy for that day. There was effectively NO speech therapy administered in hospital or rehab – other than so-called ‘swallow therapy’ to determine what type of food he should eat and to ‘test’ his level of communication. Other than good physical therapy in rehab that resulted in his being able to walk with the help of a walking frame, the only useful therapy Allen received throughout his period in hospital or rehab was what I provided during long days at his bedside, seven days a week. Had he not had a partner to do that, he would most probably now be in a wheelchair in a high-care nursing home (which, at the time of his discharge from hospital, is where his physician told me to place him!)

We know that PPA damage is progressive, and that things may continue to get worse. But hospitalisation and surgery, far from being a remedy for a PPA sufferer, may well be a ticket to a nursing home, or worse. So before you or a partner who suffers from PPA undergoes any surgical procedure, be sure to do a lot of investigating and talking around. Make sure your surgeon AND relevant hospital staff understand something about PPA and the likely effects it may have on routine medical procedures. Find out what medication is routinely used in post-surgical treatment, especially in Intensive Care wards, and what if any effects such medication may have on a compromised brain.

We were lucky in having a surgeon who was totally supportive of Allen’s needs and, most importantly, who recognised and validated my expertise in interpreting Allen’s behaviours and responses and my knowledge about PPA. Initially at least, I did not enjoy the same relationship with the other health professionals who treated Allen through long weeks of post-surgical hospitalisation. And if your partner suffers from PPA, be prepared for the fact that if you have done the minimum amount of research about PPA that caregivers usually do, then you will probably know more about the condition than anyone who treats your husband in a routine hospital environment. So you, as advocate, may well be your partner’s most important healthcare provider. And this may be a tiring and thankless job, since health professionals’ initial response to you may well be hostile. You may have to fight your way into ALL consultations about your partner’s care – including being present when ‘rounds’ are done (initially, I was locked out of the ICU ward at these times). The only medical professionals who really know and understand your partner’s needs – e.g. your family doctor (if you’re lucky), your gerontologist or other specialist – will not be accessible to you and your partner in hospital. So your partner may be treated as if he or she is demented, which is distressing. Or just as bad, information, questions and/or instructions may be directed at your partner, which he or she either cannot understand or remember, and which he or she cannot tell you about, if you weren’t there at the time.

It is a battle to get best-practice treatment for a PPA sufferer in hospital. And I’m told by friends who have had a stroke or whose partner has had a stroke, that the same applies to most aphasia sufferers. So even though we who live with PPA are prepared for the fact that our lives have been turned upside down and it’s a constant battle to retain communication function, it’s an even bigger battle if you also have to undergo what might otherwise be a routine surgical procedure. Be prepared for that, be vigilant throughout the experience and then fight your way back to health afterwards, even if the medical experts give up on you.

Spring cleaning in Doonan

After many months of mainly pleasurable slogging, interrupted by a two-week trip to NSW, I can finally claim that the garden is (more or less) under control. Oh dear. That sounds too much like a statement from the anal-retentive school of gardening! Let's say, instead, that these days walking around my undulating 1.3 acres of greenery gives me pleasure, not pain – and that certainly wasn't the case a few months ago, where every tour of the garden left me feeling I would never be able to claw back the mountain of weeds that had overwhelmed so many garden areas.

First, the stairway down to the so-called 'camping platform' is relatively weed-free, and the weeping lilly pilly hedge, the planting of which was Allen's last big pre-operative effort, is now well mulched. Admittedly, that nice little bit of level ground near the pond that we refer to as the camping platform has only ever seen tents twice, when the guest-rooms overflowed on two Christmases. But I live in hope that one day grandchildren or other young visitors will set up their tents down there to enjoy some peaceful sunsets. Meanwhile, we ought to refer to it as 'the badminton court', as that's what we mostly use it for in summertime.

The pool surrounds, too, are all weeded, and the annual springtime show has begun. At the moment, it's bougainvillea. But the humble abelia (bottom right in the photo) and showier gardenias will do their thing a bit later in the season.

Just in case, dear reader, you don't appreciate the amount of toil and bother this has all required, here's a peak at how the above area looked before the big spring clean-up! And that's not just any old weed in this shameful photo. Most of what obliterated all the plants around the pool is a dreadful vine with barb-like seedpods. The most I could do in any day's weeding was about two metres of garden! And each day before coming indoors, I'd have to unpick hundreds of the sticky weed seeds off all my clothes and gloves. That's subtropical gardening for you!

Some of the less showy corners haven't been overlooked either. This little pathway leads from the vegetable garden below, up alongside a small watertank the contents of which are used to top up the pool, to an area alongside my studio where we keep our wastebins etc. It's a route I often take, but until now it's been a slippery bank of muddy grass, and more than once I've nearly tumbled in my rush to get from one place to another. So I decided to use pieces of preserved pine and some of the gravel that was left over from the new drains that handyman Neville installed under my raised vegie bed, to make myself a set of secure little steps here – part of my ongoing 'make the garden safer and easier for old age' program!

When we finished draining and raising that vegie bed, to take away the water that pours down onto this area from the hillside above during tropical downpours, this is what the vegie garden looked like.

The next photo shows what it looked like this morning. So it seems those drains are working well. The 40 sugarbags of mushroom compost that I mixed in probably helped, too.

Incidentally, the white chair in these photos is one of four that I picked up at the tip shop for a few dollars. I've placed them in strategic locations around the garden where Allen might need a short rest while taking his exercise. He can pretty much walk around the whole block now, thanks to four different sets of railings installed for us by Maroochy Home Assist.

The Home Assist Secure service is a State Government program that helps people who have disabilities continue to live in their own homes. Allen became eligible for this assistance when an Aged Care Assessment Team determined that his post-operative problems entitled him to 'high care' status. That ACAT assessment was intended to convince me that Allen should be placed in a nursing home. Luckily, it failed to do so, but it has proven to be a useful label for other reasons. 

So far Maroochy Home Assist has built us access ramps over door sills (when Allen was first home and needed to use a wheelchair), adapted our shower so that I could roll Allen in and out using a shower chair (that's also when he was first home – now he walks in and out on his own steam) and installed numerous 'grab rails' in the bathroom and toilet. They also send someone to clean out my rain gutters whenever I request it, and a plumber came to give me advice about our sewage drains. If there are materials needed for any job (e.g. the timber and cement for the various railings and support posts), we pay for the materials. But the labour is free. Unfortunately, they don't do big repairs or general gardening and weeding. But it's a great service, and we couldn't easily have managed without this help, especially in the difficult first months after Allen came home from rehab. A lifetime of our tax dollars coming home – that's how I see it!

The very first area I worked on when I began the Big Spring Clean was the garden alongside the driveway parking area. And I finished that just in time for our own little annual azalea show. In fact, this photo is now more than a month old, so the azaleas are almost ready for their post-flowering trim. But that's not nearly as photogenic a stage as bloom-time. So I'm showing you that slightly older photo here.

Luckily, my garden doesn't usually get as much out of hand as it did this year. But it was a difficult winter for both Allen and me, thanks in part to his fractured shoulder injury. Suddenly Allen again needed assistance with just about every one of the basic tasks he had relearned to do for himself over the previous year (like showering and even cutting up his food). So for four months during his slow recovery from the fracture, we focused mainly on indoor pursuits and twice weekly visits to the rehab hospital. And of course, we also spent a lot of time preparing for Allen's Sydney presentation. But things are getting back to normal now, so I hope that not only will it be easier to keep the garden in shape this summer, there'll also be more time for blogging.

Rose-coloured leaves on lilly pilly trees and azure flowers on jacarandas mean Spring has arrived in Queensland.

Partners in caring

Today is a cold wet day here in Queensland. Of course, 'cold' is relative. It's about 17 degrees Centigrade (64 Fahrenheit) and there's no wind at all. So I can hear North American and Tasmanian readers snorting in derision! But it did rain last night; the gauge says 22 mm – just enough to bed down my new mulch and provide a good drink to the grapefruit and oranges that are near to ripening. But this morning it's still damp out and there's hardly any sun, which is not a typical winter day here in Paradise. So we are feeling hard done by.

Except for this: I am home ALONE for the first time since A came home from hospital this time last year. Until today, except for one four-hour session each week when a Blue Care carer has come in to spend time with A while I go off somewhere, A and I have spent every waking and sleeping hour of the year in each other's company. And I have never in all that time been home alone. It has to be a testimony to our deep affection and great friendship that A and I have managed to get through this post-operative year without any eruptions that I can recall. But much of the credit for this has to go to him – to his easy-going nature, his willingness to accept change and his refusal to give up trying to get on with all those intellectual pursuits that have made him who he is. Even when, in the first few months after his release from hospital, he could not yet get to his feet without assistance, he would spend hours every day reading, relearning how to form letters and practising his writing, singing along to favourite songs and practising his speech.

This week A began a six-week program of rehabilitation at Eden Rehabilitation Centre. He'll go twice a week, for four hours a day. He's an in-patient during these sessions, so the program is covered by our health insurance. Focussing on 'Falls Prevention', the sessions include physiotherapy, occupational therapy and various other therapies tailored to meet the needs of the four people participating (three elderly women and A!) It's about a 15-minute drive for me to take him there, and the 8am starting time is a challenge for late-risers like me – though no problem for A, who easily gets up at 6am, which is what we both need to do to be ready in time. But except for one hour once a week, I'm not expected to participate in these 12 half-day sessions. So for most of A's time there I am free to do whatever I like. Today I decided I would come back home and just be here – alone.

Solitude has always figured high on my list of indulgences. The informally negotiated terms we agreed when A and I started living together more than 30 years ago included an acceptance that neither of us would give up following individual pursuits and chasing our own dreams. For A, this meant implementing a plan he was already formulating before we linked up, to give up his secure arts administration salary and return to freelance theatre work. We made sure to get a mortgage on our first home approved before A's resignation, because at that time banks were reluctant to consider anything but the male breadwinner's salary when making decisions about mortgages. Mortgage secured, though, A quit his job in administration and resumed work in theatre and scriptwriting.

Some years later, when my career development depended on an interstate move, there was never any question that A would agree to this. His being freelance made it easier, but at his age then (58), finding new outlets for his freelance services was not easy. Ten years later, when my consultancy work meant more overseas travel, A might well have been reluctant to make more changes at a stage of life when most people are well set in their ways. But when the time came to make a decision, he enthusiastically wrapped up his professional activities and made a graceful transition to supportive house-husband.

Being 17 years older than me probably made it easier for him to give up work, but it was late in life to take on the job of running a household, especially in a developing country! Even so, A tackled that with dogged persistence and great good humour. His experiences dealing with plumbers in the Philippines, where clients were expected to buy and supply all the necessary parts for any job before work could begin, are worthy of a separate post! (In the end, the fact that our flush toilets functioned at all was due more to A's handiwork with bits of metal and plastic – and rubber bands! – than to local plumbing expertise.)

So I continued doing aid work – in the Philippines, Laos and Vietnam – and A continued to manage our domestic life. Sometimes this meant setting up house for a few months in a hotel room, with lots of negotiation about such things as better reading lights, additional pillows for reading in bed, a second desk for A! Inevitably, when the time came for departure there would be heartfelt farewells with staff, thanks mainly to A's being on such good terms with everyone. Cleaning girls would give us gifts, as well as vice versa, and we would find ourselves at weddings and other family events with the families of young hotel managers and others whom A had befriended. In one two year assignment, we never again had to stand in line at the state bank's currency exchange office after the girls working there adopted A as a surrogate grandfather.

Over the years of my various assignments, A has helped to train local scriptwriters for educational TV, helped senior secondary students in Laos to direct a film as part of their introduction to media, and made market ladies giggle in gleeful expectation every time he would alight from a tuk-tuk to shop for the week's provisions. Now, those same qualities that enabled him to deal calmly with situations that many his age (and younger) would have found trying are helping him to tackle the more stressful challenge of losing his ability to use language. He's a survivor, and perhaps most importantly, he is adaptable. Nor is he too proud to admit what he doesn't know or can't do. And he doesn't mind accepting help. All of that makes my role as caregiver so much easier.

Even so, in recent years we have both had to give up things that meant a lot to each of us. We've lost access to my good income stream a lot sooner than I had planned. A has lost his independence, self-reliance and the pleasure of participating actively in the upkeep of house and property. He can no longer take on the little building projects he once loved. And I know he worries about being a burden. I have had to give up work that I loved and the chance of a livelier retirement than I expected. But perhaps most of all for me, for much of the past year I have had to forego the occasional spells of solitude I enjoyed while travelling alone on short-term contracts, disappearing into my studio for days at a time or just being at home alone while A was out pursuing his own activities.

Now we live in each other's pocket, it seems. For both of us, that's a new, more conventional existence than what we were used to. Luckily, we seem to have got through this difficult year of transition to...well, who knows to what! One thing we've realised is that none of us knows what will come next in life. This year we have learned not to worry about that so much, and just to live in the present.

Back on (blog) track

I'm back! Of course, I've been here all along. We both have – A and me! But we've been engaged in a furious round of medical and allied health appointments, as well as participating in two different sets of aphasia clinics, each lasting several months – one in Brisbane (therefore that's a whole day's commitment each time) and one closer to home on the Sunshine Coast. Then A began a series of weekly physiotherapy sessions at the rehab hospital where he was a patient following his hospitalisation in 2009. What with running around to all these places and helping A in the routine tasks of daily living that he hasn't been able to do without aid since he fractured his shoulder in a fall in late March, I have been just too busy to spend much time here on blogging.

We are still seeing various doctors about a problem with A's kidneys, a condition probably exacerbated by all the antibiotics that were required to save his life from that terrible post-surgical bone infection. He may need a minor surgical procedure to insert a stint into one kidney to alleviate that problem, but I'm assured this is a minor procedure, one I hope will require only local anaesthetic.

So things are getting back to 'normal', or what we've now come to accept as normal. A's shoulder bone is finally healing – though we had a big scare after two months when one doctor suggested the fracture wasn't healing and so might need some kind of surgical intervention. But a specialist bone doctor put our fears to rest, saying he could definitely see new bone forming. And now we can see evidence ourselves that the shoulder is getting better.

This morning I heard a yelp from the kitchen, where A was busy unloading the dishwasher (that in itself another sign he's getting better!) I was briefly afraid he'd done some damage or fallen again. But it turned out this was a yelp of joy, because he'd just been able for the first time since his fall to raise his arm high enough to hang up the pots from last night's dinner!

This week is the first week in months that we are able to spend almost every day at home. All we have is one doctor's appointment and one physiotherapy session. Oh, and a Film Society screening on Wednesday evening (The Eclipse). As a result, I've been able to spend the first two days of this week in the garden. From just one small section of garden bed on a terrace above the swimming pool, I've cut out a whole trailer-load of a terrible new vine-like weed that has sprung up in the past year (don't know the name, but it has awful bean-like fruits so will probably sprout again; I will need to be vigilant). A has spent the first two mornings of the week at his new pastime – drawing. We are retired, at last!

Incidentally, doesn't our new pergola look great? Can you imagine any better use of the top of a 40,000 litre rainwater tank? Now watch this space and soon you'll see a few other scenes from my newly weeded garden!

And it’s only Monday!

This morning I took A to the dentist for the first of several visits to have a tedious 'root canal' job ("...a dental procedure that replaces a tooth’s damaged or infected pulp with a filling. The pulp consists of specialised dental cells, blood vessels, tissue fibres and some nerve fibres located in the hollow space in the central part of the tooth..." – that’s a quote from the Better Health Channel, a useful Victorian government website providing health and medical information).

Background: We have just finished dinner last Tuesday in front of TV – A in his Superman chair, so called because it flies him up into the air at the push of a button. (Since I bought him a great little adjustable tilt-table on lockable wheels to use with this chair, the electrically operated recliner has functioned as sometimes-desk chair, hobby chair and dining chair, as well as TV chair and frequent site of daytime naps.) I forget what was on the menu on this night – lamb chops, I think.

As I am clearing away the plates in a bit of a rush, keen to be ready for Foreign Correspondent, A pipes up with: "I think I lost a tooth". I immediately think to myself: "Oh no, one must have fallen off his partial plate. Did he swallow it?" But he removes his plate (bottom jaw) and smiles at me. And no, it's not a bottom tooth that's missing; it's one of the two front teeth in the upper jaw! If I remember correctly, that not really HIS tooth either, but an expensive 'cap' attached to a tooth fragment. So where is the cap? And can it be re-attached?

After a frantic search through table scraps, I finally locate the gleaming little metal-backed porcelain curio. On closer inspection, I see that the cap must have been attached to the tiniest fragment of original tooth, which has now completely snapped off. Not surprising, really, given all the pushing, tugging and tubing that A's jaws were exposed to last year before the decision was made to do a tracheotomy at the end of his first week in hospital.

First thing last Wednesday morning, I ring the dentist’s office. They kindly agree to fit us in at about midday, to see what can be done. But there’s a hitch: we have long ago scheduled A’s Extended Primary Care review with the specialist nurse at our doctor’s office for this Wednesday morning. She only takes these appointments on Wednesdays, and this is our only available Wednesday. Every other Wednesday, we travel to Brisbane for A’s speech therapy clinic at the university. But this Wednesday there’s no Brisbane clinic due to uni holidays. So we can’t reschedule the EPC review. We will just have to rush from there to the dentist – about half an hour’s drive away.

And there's another complication. Wednesday is also the last day of grandson Sam’s one-week stay, and we have promised to take him to a movie in the afternoon. Never mind. The dentist should fit in between the EPC appointment and the movie, with enough time before the movie to grab some lunch somewhere. (Wise old grandma knows better than to go to the cinema with a hungry 12-year-old. The $12 we gave Sam for his movie-time ‘snacks’ would never be enough to fill him up without some lunch beforehand.) The three locations (doctor’s and dentist’s offices and cinema) are all in different towns spread out like points on a ribbon here in the Sunshine Coast hinterland. We will have to move quickly all day (not something A is very good at!)

Fortunately, it all goes like clockwork – greatly helped by Grandson Sam’s good nature and patience, even though the book he’s currently devouring got left at home during our hurried departure on Wednesday morning. But his Nintendo DS Lite made it into my bag, so he spends the waiting time at the doctor’s office happily enough, training his pet Nintendo dog to obey and do tricks. (See any transferable skills there? Oh well, it is school holidays.) Then the dentist’s receptionist lets him choose which TV station to watch in her waiting room.

The dentist manages to ‘bond’ A’s cap back in place with some kind of (we assume) non-poisonous cement! But she isn’t too optimistic about the chances of success. She warns me to watch carefully to make sure A doesn’t swallow the cap if it detaches again. At first I think she is concerned for the damage this might do to A's gastro-intestinal tract. Then I realise she is only suggesting that a swallowed cap will make a very expensive meal, because if this bonding doesn’t work, then a ‘root canal’ procedure, to dig out the remains of the tooth and replace it with a ‘post’, will be the only option. And that will all go much easier (and cheaper!) if we haven’t lost the cap, which can be re-jigged to fit over the post. (Is she suggesting I might somehow want to retrieve a swallowed cap a day or so later?????? Really, there are limits to a carer’s devotion!)

After a quick lunch at our favourite noodle bar (Sam bringing in a sausage roll from next door), we arrive at the cinema just in time to get priority seating before the doors actually open to the public – thanks to Granpa’s tottering status when surrounded by ankle-biters. Sam is very impressed by this, as we get to choose whatever seats we want. By the end of the day, though, we have been going non-stop for seven hours. Even allowing for the time A slept during the movie, we are all pretty tired by the time we get home.

Next day, Thursday, is Blue Care day, in which one of several different angels comes and spends four hours with A while I go off and ‘do my thing’, whatever that may be. In the first months after A’s hospitalisation, I would have to run around doing all the week’s errands, including groceries, as this was my only time away from home. But now A happily accompanies me on all such errands, provided I slow to a snail’s pace or, sometimes, ‘borrow’ one of the shopping centre’s disability go-karts (which he loves). So now during A's carer visit, I am free to entertain myself however I see fit for these four hours each week. At first, without a plan and unused to this freedom, I would drive around aimlessly, unable to decide how best to spend these sacred few hours. Now that I’m better organised, I usually go to a favourite nursery and browse the plants, maybe buying, maybe not – it doesn’t really matter. Very occasionally, I have lunch with a friend. Other times, I just walk by the river or in the National Park. It’s all good medicine.

On this Thursday, though, I am supposed to meet Sam’s ‘real’ paternal grandma (he has quite a few step-grandmas like me!) a half hour down the highway, where we will effect the grandson handover and have a quick coffee! That doesn’t quite go to plan, however, since my Blue Care angel doesn’t arrive until 15 minutes after the time scheduled for my highway rendezvous with Sam's other grandma. Thank god for mobile phones (how did we ever manage get-togethers without them?) The meeting place is quickly changed, with Grandma Grace (GG, as she’s known) offering to drive further in my direction. So I finally hand over the red-headed package safely, GG treats Sam and me to some lunch, and I head off with enough time remaining for me to call into my favourite nursery, Fairhill Native Plants, on the way home. (You can see one outcome of that day's purchases in another recent post.)

Arriving back home on Thursday after my time-off-for-good-behaviour, I walk in the door to A’s big smile, a gap showing where the top front tooth should be! Luckily, our Blue Care angel has retrieved the cap, which hadn’t survived the chicken sandwich, let alone the apple that followed. Obviously the repair was doomed. The next morning, after a couple of phone conversations with the dentist’s receptionist and A’s assurances that he is OK to manage the long sessions in the chair that will be required, we get two appointments this week for the invasive drilling and fitting that, we hope, will re-anchor that salvaged cap into the top jaw 'till death do us (or it) part'.

And the result today: Here we are this morning at the dentist's again. A is just settling into the chair when the dentist asks: “Is he on any blood pressure tablets?” My god, I realise, I don’t really know what two of his five daily tablets are for. (Caregiver-guilt strikes again!) I ring our doctor. The dentist holds the needle in her hand, poised to inject, but our doctor is on the phone to someone else. Minutes (it seems longer) go by. Finally I get the doctor's answer: Yes, one of those tablets is a blood pressure tablet. No problem, says the dentist, as she quickly changes to a different drug, one without adrenaline, which is OK to use with someone taking blood pressure tablets. But then the doctor, still on the phone, asks to speak to the dentist. ‘Has A had his antibiotics first?’ It seems that after mitral valve repairs, anyone undergoing an invasive dental procedure should begin a course of antibiotics at least an hour beforehand to minimise the likelihood of an infection which could make its way to the heart.

I should know this from my experience years ago taking my elderly mother to the dentist. She had the same problem but hated taking pills so much, she eventually stopped going to the dentist just so she wouldn't need to take antibiotics! I had even thought of phoning the doctor early this morning to check that very thing. But I rationalised that surely someone would have told us this at the time of the operation, or at the time of dismissal from the hospital. Did we ever get a list of do’s and don’ts after heart surgery? I guess we probably did. But A's massive post-operative complications overshadowed all the usual cardiac-related warnings we might have paid more attention to otherwise. Anyway, his supervising doctor in hospital never expected A to be able to come home, let alone undergo major dental work.

Well A got his antibiotics (probably not quite an hour before, but fingers crossed!) and I’ve added another no-no to the growing list of warnings in my caregiver’s survival manual. At the end of the week, we go back to the dentist for the rest of the procedure. Here’s hoping it goes too smoothly to warrant another post, except for before and after pictures.

A small setback

Well  here it is 10.30 am and all three of us (the two wrinklies plus grandson) are showered, breakfasted and each at our screens. It's incredible how long it takes A and me to get organised in the morning since he fractured his clavicle (that's shoulder, for the anatomy-challenged among you!) This happened about nine days ago while A was maneuvering himself into position to begin an exercise routine. He had been doing his daily exercises independently for a while, but on this day he lost his balance somehow and toppled over, head and arm striking the edge of a bookcase or chair as he crashed down heavily onto the tile floor.

I came running when I heard the yell. Just getting him up was a challenge, but then I remembered that velcro-fastened cummerbund thing with 'grab' handles that we'd bought for his first weeks out of hospital. So after wrapping that belt around him, I managed to haul him up into a chair. At first I was most worried about the amount of blood splashed around, which seemed to be coming from a wound at the top of his head. But after checking him all over I realised some of the blood was from grazed skin near the left elbow.

Our Blue Care helper arrived just about then, and together we cleaned up A's injuries, which proved to be just flaps of skin rubbed off and no serious cuts. I was particularly impressed with the arrow our helper drew on the waterproof dressings, after we had applied these to the grazed skin areas. The arrow showed the direction in which to rip off each bandage later without pulling against the direction of the loose skin flap underneath. Even our doctor was impressed with that when we brought A in the next day to sort out why the shoulder was so sore and swollen.

X-rays showed a possible new fracture to the clavicle on top of an old one from A's youth, when he'd fallen off a bicycle. Swelling and soreness since then have confirmed this, so A must wear a sling for the next month or so, and has to do everything one-armed – which has greatly reduced his sense of independence, and also his confidence. But it's not too serious an injury, and has served to remind us of a big danger for someone of A's condition at this stage of life: injury from falls. We must be more careful in future.

The seven stages of caregiving?

I confess I have not lived up to my purpose in starting this blog – which was, 'to reflect about living with, caring for and being cared for in turn by a home, a garden and a partner with primary progressive aphasia. I have published many posts about the home and garden. But 'caring for' and 'being cared for' haven't figured too prominently among the entries here.

In the main, that's a good sign. It means life has returned to some kind of normal after the traumatic events of 2009. That year, or certainly the first three-quarters of it, revolved around sickness and the effects of impairment – physical, mental and for me especially, emotional. At a few low points in the year, I did feel as if that would be what the rest of our life would be about – certainly, the rest of our life together. And while I'm being honest, I also admit that once or twice for just a few minutes I thought it would have been better for Allen, and certainly for me, if he had died on the operating table or soon afterwards. But except for one terrible day toward the end of Allen's hospitalisation, those gloomy thoughts never hung around for a whole day. And mainly I refused to believe the outcome would be anything but this: I would get Allen home, and we would be OK. It was a long time before I dared to define what 'OK' might mean. But our life here would work its magic. Of that I was certain.

My work in the past ten years has required frequent uprooting, not permanent uprooting perhaps, but I have many times found myself arriving at a hotel room or short-term apartment, unpacking my suitcase, computer and briefcase and getting ready to hit the deck the next morning as...well, mainly, a problem-solver. Never mind what the problem was, and quite often it bore little resemblance to the contracted terms of reference of my consultancy, I could get in there and fix it. But even though to people who had no knowledge of those environments my aid work in developing countries appeared to be challenging, in fact with only very few exceptions my experiences were rarely earth-shattering or heart-wrenching. Out of the ordinary, perhaps. But pretty workaday nevertheless. Even so, the ability to deal with whatever they throw at you, while living and working in unfamiliar and sometimes inhospitable circumstances, without your usual support networks – all that was probably good training for surviving life-threatening medical events.

I also had one other tremendous advantage: a partner who isn't a quitter and, maybe most important of all, who is not so set in his ways that he can't adapt. In the 12 months since Allen was admitted to hospital for his second open-heart surgery (the first, 46 years earlier, having got him to 80, he didn't hesitate one minute when asked if he'd consider doing it again), I have met quite a few carers, most of them women, and the partners they care for. I have heard some inspirational but also several sad stories – of a man who would not agree to give up driving and so continued to endanger his and others' lives every day, of a man who could not bear to relinquish control of the family finances and kept changing and then forgetting bank passwords, of stubborn, proud men who could not bear to relinquish the role of Big Chief and so made their carers' jobs much more difficult. All I had to deal with was a man who, for several months, had terrible bugs eating through his breastbone and heading for the heart, and who couldn't eat, couldn't talk, couldn't breathe without a ventilator, was often delirious and couldn't understand much that anyone but me told him.

For me, if not Allen, those three months in hospital and then rehab weren't all that difficult. At least, that's how it seems in hindsight. There were battles I had to fight - and I have written elsewhere in this blog about those and about the peculiar combination of brain-related problems that resulted in some of Allen's medical complications. But now, one year later, I realise that those first months of my new role as 'carer' were were just the introduction to a whole gamut of emotional and physical 'settling in'. True, I was living away from home during that time and that was a wrench, but I had our children every day offering care and support. I had a hot meal and cosy bed waiting every night at my daughter's home(unlike the wife of the man in the next ICU bay, who spent months in a motel during her husband's hospitalisation only to have him die on the day he was due to be discharged). I also had daily messages of support from family and friends, some of whom came from China, Sydney, Melbourne and Tasmania to be with us for Allen's 80th birthday celebrations at the hospital. There were even messages from people in Allen's past whom I didn't know. (The email message sticks spread far and wide.) I had almost no responsibilities other than spending seven or eight hours a day at Allen's bedside. And since that was in Intensive Care there was always a dedicated nurse with us, and many of them were a pleasure to get to know. From them I even learned a range of useful bedside skills, becoming proficient enough at some of them to be asked more than once if I had had nursing experience in my past.

The daily commute from my daughter's house to the hospital was a drag, but I could listen to books-on-tape and take time to compose myself before ringing the bell every morning for admission to Intensive Care. On the way home in the evening, when I needed it there was time to howl in anguish, and still compose myself before arriving at my daughter's for dinner. And since I refused to believe Allen wouldn't recover, I focused always on the small signs of progress (yesterday 20 minutes of breathing without the respirator, today 40 minutes; today Allen moves from eating only mashed-up food to taking some minced food; today he lifts his left leg 10cm off the bed, and does it while the physio is still there instead of one hour later etc.) And so those weeks slipped by until, miraculously, I arrived one morning to find Allen sitting up, awake and alert, and found out he'd just been wheeled into a proper shower for the first time in two months. It seemed to me then that the home stretch was in sight. At about Week 8, supported by a walking frame, nurse and attendant, he actually walked a whole circuit of the Intensive Care Unit. By this time we had become such fixtures in the ICU that the eight or nine nurses and other staff on duty that morning all turned to watch his progress and, when he completed the circuit, erupted in a round of applause.

After all that attention and what seemed like heroic efforts on Allen's part, being banished to an ordinary hospital room in week 10 and told, 'You'll never take your husband home, so get busy and find a high-care place in a nursing home" was a terrible wrench (the one truly awful day I referred to above)! Thankfully, with our surgeon's help we proved that wrong. And after two more weeks in a rehabilitation hospital, where Allen's main achievements were that he learned to walk using a conventional small frame on wheels and he began to shake off the effects of the cocktail of anti-depressant and anti-psychotic drugs he'd been given while in Intensive Care, we finally made it home. And that was where my carer odyssey really began.

Most of us have heard about the seven stages of grief. Maybe caregiving, when it occupies a large amount of your time and energy and ties you inexorably to being available to one person 24 hours a day, has stages that are not that dissimilar. First comes shock and denial, though in the case of a hospitalisation that should have been over in a week or two, the threat of possible loss went on hovering in the background for three months. I guess I kept denying it, and maybe that was my salvation. Anyway, I had experienced total shock a few years earlier, when my mother had her first stroke and I had to give up all hopes of getting her an Australian visa and accept that I would not be able to be near her in her final years. At that time, too, I remember too well going through the next stage of grieving - pain and guilt - fearing that I might have contributed somehow to my mother's trauma by putting her through the agony of having her visa application rejected. But in this case, with Allen, the guilt I experienced that was harder to shake off was the thought that maybe I had influenced Allen to have this operation, and had not sufficiently researched the risks.

Next stage, frustration and anger, typically includes the need to blame someone else for this aftermath. I suppose I directed most of my anger in the first few months at those doctors and administrators who tried to persuade me to give up – to stop the antibiotics, and later, to put Allen into a nursing home. That anger served me well, since it prompted me to defiance. Less useful, though, was the anger I sometimes felt after we got home toward Allen and his neediness. Inevitably, those feelings would take me back to guilt, especially if I got stuck into a bottle of red wine late at night, which was all too easy to do when the house went quiet after Allen went to bed.

So it was very easy to slide into the next stage of grieving: depression and loneliness. This was made easier by our relative isolation up here, more than an hour's drive from our children and not within walking distance of any services or shops. Admittedly, we live in a beautiful semi-rural environment, and we're only 20 minutes away from a first-class tourist destination with every shopping and other facility we might want. But especially in Allen's first months at home, taking him out was difficult and eating anywhere but home not an option. And with few old friends living nearby, I was no longer so sure I would manage physically or psychologically. This is when, say the grieving guidebooks, "you finally realize the true magnitude of your loss, and it depresses you".

In my worst moments, I felt I had lost two important pegs in my life: my independence and my best friend. Of course, I hadn't actually lost Allen, but I had lost (or so it seemed in those first months at home) much about him that I had come to rely on: intellectual companionship, a ready wit, a keen problem-solving attitude, initiative and enthusiasm in household maintenance, even someone with whom to share the cooking and cleaning, not to mention a shoulder to lean on now and then – in short, a husband.

The grief counsellors say that you eventually begin to adjust to life without your dear one – they call this the upward turn. I, however, just had to adjust to a different life with mine. After all, I still had a husband. I just had to get used to the different person he had become. Or rather, I had to learn that my husband was not a different person, even if there had to be some differences in how we lived. I also had to find ways to get back out into the garden, both because I needed to be able to do this if we were to go on living on this large block, and also because I knew the garden would be my best therapy. And since Allen couldn't do many things for himself in those early months and so couldn't be left alone in the house, I had to find a way to keep him safe while I got on with doing things I liked or that had to be done. Mostly, this meant learning to take things slower, not expecting to get everything done in a day and getting more pleasure from simple things. All in all, not a bad lesson to learn at the onset of retirement. It started simply enough with picking mulberries together, which I called Sharing the load when I wrote about it in this blog. But in fact, the load got a lot lighter as a result of my change of attitude.

Now, one year after Allen first went into hospital, I think I have finally arrived at the final two stages of grief: reconstruction and working through, and acceptance and hope. Of course, it helps enormously that Allen's physical stamina and general health have improved miraculously in the past six months. He has become something of a pin-up boy to the people who've worked with him. Our return visit to the ICU a few months ago, just to show him off, had doctors and nurses staring in disbelief. His geriatrician marvels that Allen's scores on all the standard psychological tests are almost the same as they were a year ago, even though brain scans show the 'holes' in his brain continue to expand. And from someone whose best efforts at drawing a face toward the end of his hospitalisation just nine months ago resembled those of a three-year-old (see picture on the left), Allen has progressed to writing brief letters to family and friends, he can operate a number of aphasia-specific therapy programs on computer, and he can read just about anything. Indeed, he is back to trawling the shelves on our weekly visits to the library, and recommending books he thinks I might enjoy.

We both know but don't dwell on the fact that sometimes Allen can't appreciate the complexity of a complicated plot or argument in a novel or current-affairs program. But it doesn't detract from the pleasure he gets from reading. In fact, one of the first independent things he did while still in the ICU was to pick up a newspaper I'd brought in and hold it up as if to read – upside down! He just needed to feel the comfort of that familiar act, and to believe that one day he would read and write again. As soon as we got home, he asked me to write out the alphabet on a strip of paper, which he kept on his table, practising letter by letter until he could again recognise and print all the letters, albeit in a shaky hand. He can no longer participate orally in lively dinner table discussion with friends and family, but that doesn't stop him enjoying being part of the scene. He can't remember more than a few steps in any sequence of activities and finds it difficult to execute relatively simple tasks that he once did by rote. He has trouble 'reading' a clock to tell time, for example. 'Half past' and 'quarter to' don't seem to make any sense to him, and he can't remember the different roles of the big hand and little hand, so he's as likely to say it's something after 6 when in fact it's 3.30. He knows that is wrong, but can't figure out why.

We have both accepted, it seems, that these things don't matter that much – to us, anyway. In fact, the range of things that don't matter to us is pretty astounding. Allen really has no idea at all about money, how much we have to live on, what bills I pay and what accounts I manage. If we're in a shopping centre, I might give him money and send him into a newsagency to buy a paper, where he will decide whether to get The Australian or The Sydney Morning Herald. Those are probably the only commercial transactions he has had in 12 months. Anything more than that would just confuse and upset him. But he is still better than me at selecting the best fruit to buy and making sure we get everything that's on the shopping list. And he can read and understand everything I've written here, even if it takes him a week of difficult effort to write as much as a paragraph himself.

We seem to have found "realistic solutions to our life-problems". We are "reconstructing ourselves and our lives and dealing with the reality of our situation: finding a way forward" – all things which the experts say characterise the final stages in grieving, too. People who don't know us that well still express concern for my or our 'fate'. Allen, after all, has a form of dementia! And I am stuck at home caring for him! That's what our situation looks like. We are moved by their anxiety on our behalf, but sometimes also amused. I want to tell them I feel just as bad for them, because they are still out there, part of the rat race. We, on the other hand, live quietly day to day, and do pretty much as we please, when we please. Allen is relearning how to swim. I have taken my sewing machine out again after years on the shelf. OK, the garden isn't quite up to scratch. But we have time to get pleasure from looking at it every day. We laugh an awful lot over Allen's 'category' errors. And here am I, doing what I never could find the time to do before caregiving became my way of life: WRITING.

I know in many ways we have been very lucky. But my message to carers is this: whenever you possibly can, try to enjoy some of it.